The Waiting Game

Blood workWhen your nephrologist calls you two hours after you get your monthly blood work drawn, you know something is wrong. This happened to me last week. When I answered the phone and heard my nephrologist’s voice, I instantly asked, “What is wrong?” Dr. Bhat said, “Hi, Valen. How are you feeling today?” Every thought vanished except the question I then asked, “Is my kidney OK?” Dr. Bhat said, “Yes, your kidney is great, but I need to know how you feel.” I felt my posture lighten, knowing my kidney was fine. My mind then began racing through the past couple of days to recall how I felt.

I responded to my doctor that I had not felt anything out of the ordinary lately. My blood pressure was stable and I have not had a fever. Dr. Bhat informed me that my white blood cell count was 18.2. The normal range is 4.0 to 11.0. He said my white blood cell count has not been this high since I had sepsis and needed my gall bladder removed in 2010. Wow! How could this be? He proceeded to ask if I had a cough, diarrhea, fever or any other abnormal symptoms. I had not.

When taking immunosuppressant medicines, it suppresses our immune system so that our body does not reject the foreign object of our transplanted kidney. These drugs can also conceal symptoms when we are fighting other infections. A high white blood cell count means that our body is fighting an infection. As I talked on the phone with Dr. Bhat, we discussed the concern that my body could be fighting an infection that we are unaware of because I am not showing any signs of being sick. My white blood cell count has been running on the high side of normal and now with this big jump, it was alarming. I asked several questions including if we should do additional blood work and what it is my body could be fighting.

numbers 2Since all of my other lab work levels were good and my urine did not show any bacteria, Dr. Bhat thought we should wait and see and repeat lab work in a week. He said to be very aware of my body. If I started to get any symptoms, I was to call him immediately. So far, I have felt fine and will be repeating my lab work tomorrow morning.

After receiving a transplant, recipients tend to base our health on numbers. However, sometimes our doctors base our health more on how we feel than our numbers. There are times as patients where we have to ride out the ‘waiting game’ and the ‘wait and see.’ It is easy to worry during these time periods, however we must trust that our bodies are mysterious, yet miraculous. During these times we must rely on our mental strength. Mental strength not only comes from being knowledgeable of our health and aware of what we need to do in order to take the best care of ourselves, but by letting go and continuing to enjoy the precious day regardless of what our bodies are battling.

How do you stay mentally strong when you are enduring the patient ‘waiting game’?



  1. Karyn

    How appropriate for you to choose this topic for today’s blog post!! Just yesterday I had a visit with my nephrologist where we discussed the difference between my ‘numbers’ and the way I’ve been feeling recently both physically and mentally. Being as vigilant as possible and proactive in my care, I’ve recently stepped up my workout routine and adjusted my diet even further to try to manage my BP and disease progression. I told my doctor I was feeling significantly better since my visit 2 months ago when I was recovering from a liver cyst rupture, pain, and a bout of seemed liked relentless high BP. Because I monitor and track my BP at home, I was confident seeing rock solid lower reads recently so I believed in my heart all was fine. Then he shared my lab report showing everything mostly centered with the exception of what felt like a huge jump in my creatinine. I swore I was well hydrated and he agreed based on my sodium levels. I was crushed.,Here I am feeling stronger than I’ve felt in months and those numbers told a story of obvious disease progression dropping me out of my comfort zone and onto to that threshold of stage 4 CKD. Yes, those numbers can be scary and the waiting game is uncomfortable to say the least. However, I with you Valen…. Staying mentally strong with a positive attitude makes every day worth living. (Hugs)

    • Valen Keefer

      I am sorry that your numbers showed your progression of PKD, but I trust that with how well you take care of yourself coupled with your physical and mental strength, you will get through whatever the future holds on your path with PKD. You are doing all you can, which I know helps to provide comfort and additional mental strength. It makes me happy to hear that you are feeling better. Sometimes it is nice to focus on how we feel rather than those darn numbers. You indeed make the most of every day. I admire how well you take care of yourself and your zest for life. Hugs!

  2. Dan Garwood

    Was this associated with your day of eight needle sticks, Valen? Stress and trauma can acutely bump up your white count.

    • Valen Keefer

      My MRI was the day after my blood work. Thank you for being so kind and thinking of this possible connection.

  3. Sue Swift

    Praying for you, Valen. You are a PKD Warrior who never gives up. Keep on rockin’ PKD like only you do! Sending good wishes your way.

    • Valen Keefer

      Thank you so much, Sue, for your friendship and continued support. Big hugs!!!

  4. Ellen

    Hope you will get back to normal shortly. Will be thinking of all of you who have written .

    • Valen Keefer

      Thank you very much Ellen!

  5. Catherine Blakley

    This is so interesting because I just got that call today, except that my WBC is too low: 1700 (1.7). They are testing me for CMV disease, but we won’t have the results for a few days. I was negative for CMV, but my donor (my sister) was positive. So my new kidney is positive for it. He also took me off the two antibiotics that I am taking (Bactrim and Valcyte) because antibiotics can cause a low WBC. I am also on “house arrest” and can’t go out where I would be around people. And, I can’t eat any fruits or vegetables because of the potential bacteria. I have also been battling a lymphocele for the past 3 months. Will have another ultrasound next Thursday, and hope that it is gone for good. I keep trying to stay positive by thinking about what a miracle it is that the doctors took something out of my sister’s body, put it in mine, and it’s working (Creatinine 1.1). It still amazes me. I have great confidence in the doctors and nurses in my kidney clinic, and know that this will pass.

    I hope your lab results are good tomorrow. Keep strong!!

    • Valen Keefer

      Thank you for your well wishes Catherine. I wish the same for you and am very sorry to hear of all that you are enduring. I sometimes feel that taking care of ourselves is a part-time or full-time job and it sounds like that is the case for you right now. I am happy to hear that you are still focusing on the positive like your healthy kidney and confidence in your kidney clinic. I share the same thoughts as my healthy kidney always keeps me grounded and grateful. No matter what I am enduring, I am always in awe and so thankful to have received the gift of life and that my kidney is functioning so well. I hope you receive positive results and things start to calm down for you. Sending strength, love and positive thoughts your way.

  6. Karin

    Hi Valen,
    I am sorry to hear you got one of those nerve wrecking “doctor calls”. When I am left pending on the “wait and see” status I try to focus on something totally different to give me strength. For instance, I spend much time reflecting on the love and support of my family and friends, I go for walks and take the time to enjoy the flowers, listen to birds chirping, feel the warm sunshine of the early morning….
    When I get home I bake or cook something yummy and healthy. The aromas and vibrant colors of foods cheer me!
    I spend time alone. I cry when I need to because it is okay to feel sad, frighten and frustrated! But, then I smile because I am determined not to give up !! I remember how important is to keep that cortisol down because stress will mess up things big time!
    Keep the faith, Valen!!

    • Valen Keefer

      Hi Karin,
      Thank you for sharing your fantastic advice. It is wonderful that you have all of these happy outlets to help you during your health hurdles. I do the same and focus my mind on things that make me happy and grateful for this beautiful life I have been given. Thank you for your well wishes.

  7. Jillian

    Keep living life as normal. Whether you panic or not isn’t going to change the result. All panic will do is ruin and otherwise good day, especially if you’re feeling well otherwise;-)

    Live in the here and now, not the “what if”!

    • Valen Keefer

      I completely agree, Jillian. Thank you for sharing your great advice with all of us. Take care!

  8. Doug K

    First timer on the Blog. Don’t worry about something until there is more information, that is my policy. I agree with earlier statements live in the now don’t worry about the unknowns.
    On May the 18th the surgeons at Duke removed my 2 PKD kidneys and I was the recipient of a living donor, my nephew. I lost around 38lbs. All is going well except my blood pressure. It is very low every morning which leaves me with out energy to do much of anything. Has anyone experienced this?
    Thanks Doug

    • Valen Keefer

      Welcome Doug! I’m so happy you found my blog. I agree with your wonderful advice. Thank you for sharing!
      Congratulations on receiving the gift of life and having both of your PKD kidneys removed. I had a bilateral nephrectomy when I was 18 and received a kidney transplant at 19. I am coming up on my 13 year kidney transplant anniversary! 🙂 I’m so happy to hear that you are doing well. I dealt with extremely high blood pressure prior to my transplant. It has gotten better, but I still need to take blood pressure meds to control it. I hope there are others that can connect with you in regards to enduring low blood pressure.
      Thank you for reading my blog. I hope you enjoy it!

  9. Peggy

    I have recently found this site as well as several of the blogs with a lot of helpful information from others experiences. Thank you so much for your stories because it helps to hear how others are coping…. My husband was told back in 2008 when he was 46 that he had multiple cysts on his kidneys. At that point he had 11 on the left and 8 on the right. He was not given a PKD diagnosis at the time and I have since wondered if its because so many doctors are unfamiliar with this disease. He was having some flank and groin pain issues that led them to discover the cysts. At the time we did very little research into the discovery for several reasons. They determined that he had a pulled ligament causing the pain, or so they thought, his doctor made it seem as it was no big deal and at the time we not as internet savy as some so information was limited. In 2013 his urologist suggested a possible PKD diagnosis even though we have been unable to confirm any family genetics so far. Once again we did do a little research but his primary doctor as well as his nephrologist basically said there is nothing you can do its just wait and see. We were also told that there was no pain or physical changes that would be detected through the decrease of kidney function! Even though my husbands health was continuing to deteriorate. Only after he recently suffered through a few weeks of pain and tenderness and then only to awake one morning urinating a tea like substance with blood obviously in the mix and a visit to the hospital have we began to ask what can we do. The nephrologist suggested a possible cysts burst and maybe infection could be the culprit but the infection was ruled out with further testing. He had went from about 1g of protein in the urine to 4g. And his GFR was at 50 last test they did. Unknowing to us his nephrologist has had him diagnosed at a level 2 CKD for who knows how long but until we got a copy of his record know one had even bothered to give us this information. We feel like we have been in this shell with limited information for the last 7 years but after discovering the PKD cure site and several of the informational videos and webinars it is finally all making sense. The syptoms he is experiencing are very common with the information and testamonials we are hearing! We are now researching and looking for information. Its has been somewhat overwhelming for both of us because we feel like we have to make up for lost time. We have enrolled in a local kidney health class and are in the process of looking for a clinic or doctors in our area or even Florida period who are familiar with this disease. We may or may not be able to change the tide but we would rather not be blindsided by it either. We are from the south Florida area if anyone has any suggestions we would be open to them. Thanks for listening!

    • Valen Keefer

      Hi Peggy,

      I am so happy that you found my blog. So sorry to hear of the ordeal that you and your husband have endured until you received his official PKD diagnosis. I can relate all too well with having blood in the urine. I had tons of cyst bleeds, which wound up being the ultimate demise of my kidneys.

      There are three PKD chapters in Florida. The Central FL Chapter, the Tampa Chapter and the South Florida Chapter. If you visit this site:
      you will see three purple dots in FL. When you click on a dot, it will give you contact information for that chapter. You can then reach out and connect with other PKD patients in your area and hopefully receive insight on a great PKD nephrologist close to you. Are you on Facebook? If so, you can friend me at Valen Cover Keefer. I looked on Facebook and there are two FL Facebook pages. One is PKD Foundation – Central Florida Chapter and PKD Foundation – South Florida Chapter.

      I hope this helps. Please let me know if there is anything I can do to help. I wish you and your husband all the best! I hope you continue to enjoy my blog! 🙂



  10. Carmensina

    Hi, i Am very pleased to have found this page and this blog, we live outside the united states and my daughter who is 7 was recently diagnosed with PKD but in our country this desease is hardly known. By your knowledge could you tell us were in the united states is a good Childrens hospital so we could take our daughter to get Her follow up. Thank You!

    • Valen Keefer

      I’m happy you found my blog, too. Are you on Facebook? I decided to post your comment on my Facebook page to see what my PKD friends and community had to say and am receiving a great response. If you are on Facebook, please friend me- Valen Cover Keefer so you can read the responses. If not, please let me know and I will share all of the comments I have received via Facebook here on the blog. Wishing you and your daughter all the best!

    • Valen Keefer

      Does your daughter have ARPKD or ADPKD? How is her health? I have been asked this question by those giving suggestions on hospitals. Thanks!

    • Valen Keefer

      Hi Carmensina,

      I have also been asked which state you would be able to travel to in order to help narrow down the search. Since I have received such a great response on Facebook, I decided to copy the responses and share them on here. These are responses directly from PKD friends on Facebook. Please let me know how else I can help.

      – Denver Children’s Hospital they have a program for kids or they used to she need to check them out. Many years ago they paid for my brothers children to all go there and be tested and worked up.

      – I am happy with Harborview in Seattle. They gave me charity care too when I needed it.

      – Boston Children’s

      – Children’s National to see Lisa Guay-Woodford.

      – I go to Rady’s Children in San Diego California and I see Dr. Ingulli. She knows about pkd and has been very helpful for me!:)

      – University of Minnesota Masonic Children’s hospital is amazing.

      – Seattle Children’s has been our go-to since Bug was 5 days old. She’s been in & out of various clinics/specialties for the last 19 years. V has also been in & out of a couple of their clinics/specialties. They have a great uncompensated care program, in fact they picked up what insurance didn’t during Bug’s cancer treatments. Ronald McDonald House is literally across the street if that’s important. Bug also participated in a PKD drug study that was based at Denver Children’s Hospital. These 2 places are on her wish list to work once she finishes her nursing degree because of the quality of care she received from all the staff.

      – Driscoll Children’s Hospital in Corpus Christi Texas…..they also have the Ronald McDonald house for her to stay in

      – Dr. Ellis Avner is a pioneer in PKD and he is at Children’s Hospital of Wisconsin. He helped train, educate, and research in PKD. He used to be on the Board of the foundation and is a leading researcher. He is a fantastic Dr
      and would be worth seeing

      – I would have them check out UCLA Children’s Hospital in Los Angeles

      – Hopkins, of course!

      – My daughter did her clinical trial at Children’s Hospital Colorado which was excellent. Her regular pedi nephrologist is at Mass Massachusetts General Hospital in Boston there she sees Avram Traum…he is the best!

      – Are we assuming AR or could it be AD? Ann & Robert H Lurie Children’s Hospital in Chicago is good. Also, Dr. Arlene Chapman is now at University of Chicago Hospital. And, of course, Mayo and Cleveland Clinic are very good for PKD Patients.

      – Yes, Seattle Children’s!!

      – We love UCDavis, but we can’t speak for their kidney program(s)….

      – Dr. Avner has retired. Dr Lisa Guay-Woodford is an internationally recognized PKD expert and is in Washington, DC at Children’s National Health System.

      – Tufts floating in boston. Dr. Milner is top notch.

      – Children’s Hospital of Philadelphia

      – In the Pacific Northwest, Seattle Children’s Hospital is consistently ranked as one of the top US hospitals for pediatric nephrology. I already see a recommendation above from Veronica.

      – Can’t go wrong with Anschutz Children at Univ of Colorado

      – Lisa Guay-Woodford would be my first choice no matter what!!!! But we are in NY and go to Mt Sinai and love Dr Jeff Saland. Tell us what state she can get to and if it’s AR or AD and I can tell you more then.

      – There’s a children s Hospital in Cinnanatti Ohio And Louisville Ky

      – Children’s hospital of Philadelphia (CHOP) for either types of PKD

      – For children with PKD…John Hopkins in Baltimore. They have a medical tourist department that will coordinate travel and housing

      – Seattle Children’s is a fantastic hospital and I know some of the docs there.

      – Children’s hospital Boston, renal transplant team rocks

      – Riley Hospital in Indianapolis, IN

      – My granddaughter is two with ARPKD and she gets awesome care at Oschner Medical Center in New Orleans.

      – Motts Childrens hospital in Ann Arbor, mi. That’s where Jessica got my Kidney.

      – Denver Childrens! Dr. Melissa C , if we could move there I would. Troy participated in a study a while back and Dr. Melissa has spent her life dedicated to finding a cure for PKD. We go to Pittsburgh Children’s because it’s the closest children’s hospital near us. We do like our doctor though for the boys.

      – My son goes to children’s in Kansas city mo. Also a friend goes thru the children’s on st Louis. Mo.

  11. Amanda R Kuhn

    Hi I have an quick question since 2019 I have been battling a white blood cell count problem. 2 months ago I went to my doctor at providence in lacey my white blood count wad 12.15 and just yesterday evening I had an appointment with them and my white blood cell count is up at 14.23. I was wondering if I could get someone opinion on what might be going on. My white blood cell count has been high as 15 then down to 13.33 and back to 10.9 then up again FB is year at 12.15 as of July of this year and now it is at 14.23 that is not a good thing. So if I could have someone opinion on what it might be I sure appreciate it. Thanks….

    • Valen Keefer

      Hi Amanda,
      I’ve had increased white blood cell counts when I’ve had a UTI, cyst bleeds that got infected and also when I’ve had liver infections due to my bile duct malformations, all because of PKD. I hope you’ve gotten to the bottom of this and are feeling well.


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