Uncharted Waters

Hello Transplant Friends - Yvonne Strong here - heart transplant Aug 1995. I haven't posted for so long!  In December of 2014 I had a brain hemorrhage from Warfarin and have been on a slippery slope ever since. For several years I had been clotting and was put on the blood thinner Warfarin.  In April of 2014 I formed a huge clot in my thigh and had a Venus Cava Filter placed in the inferior vena cava (IVC) to trap clots. After the brain hemorrhage I could no longer be on blood thinners. As you might guess I continued to clot - the filter apparently worked or the clots did not move. A couple weeks a go I formed a clot in the calf of both legs.  The clot in my right leg dissolved and did not give me any problems - however, the clot in the vein in my left leg became one huge clot from my ankle to my knee - I cannot describe the excruciating pain - I am still on pain meds. The doctors have never seen this happen - hence the term "Uncharted Waters." Doctors do not know why I am doing this - perhaps an unknown blood disease.  I have opted to chose "Quality of Life" vs pain and all that comes with my condition and have decided go under Hospice Care and not keep doctoring. It is a certainty that I will form another brain hemorrhage as it is just a matter of time. I am only on necessary meds including my immune suppressant drugs. But!  I know that God is in charge of when I leave this earthly sphere and I am in peace.

I am not blogging for sympathy as I have had 20yrs additional life which I am so grateful for. It has been a wonderful journey - grandchildren graduating, marriages, great grandchildren's births and all the wonderful family get togethers. I have reached every goal I have set. I just became a great grandma the 17th time March 1. I am so blessed to have my faithful husband and children by my side. They have loved and cared for me is so many ways I can't count.

I love my donor's family for their great gift of love and life to me. In their time of great sorrow they gave me such a precious gift.  My wonderful team of doctors are so magnificent.  They are all standing beside me, and I am sure they are looking for answers to this anomaly. They pledge to be by my side throughout whatever happens.  Perhaps my experience will help others in the future.

I pose this question to you - has anyone known or heard of of someone forming clots such as mine?  Remember I had one huge clot in the vein of my left leg that grew to be as long as from my ankle to my knee. Has anyone suffered from an unknown blood disorder such as I have described or something similar?

I still read Transplant Friends every week and marvel at each persons valiant journey.  Kidney Boy I am glad you are still posting.  When I made my decision in the hospital about "no more doctoring" that decision came because of diligent prayers that were answered from my loving Heavenly Father. My beloved transplant surgeon, came to my bedside, put my hand in his and said, "When you are in the hands of God you are okay."  Please know I am okay!

Love to you all. If I can do anything to help you please feel free to ask.

E-mail me when people leave their comments –

You need to be a member of TransplantFriends.com to add comments!

Join TransplantFriends.com

Comments

  • Cora.  Thank you for your sweet words and your support. I am amazed at the direction your clots have taken - good grief. What is a fempop bypass. In the beginning when they found this huge clot in my leg they talked of a Vascular Surgeon to try to remove part of it - but, he wouldn't even consider such a surgery. I've had a couple of rough days and feel like I'm just about out of gas.  I also am suffering with sciatica which certainly is not helping any. Do your clots move? Your so right about these drugs we take to keep us alive we never know what they are going to cause in our bodies.  I remember before transplant I was told that transplant was not a cure but I would live with chronic conditions the rest of my life which has proven to be true. My love to you.

    • Hi Yvonne. Sorry for the medical shorthand. It stands for a femoral popitleal bypass. It involves femoral blood vessels and the blood vessels in my calf too. So I have some lovely and pretty scars (not being sarcastic, they healed beautifully) from groin to knee on the inside of my thigh, and then from below the knee to just above my ankle. That leg is more swollen (due to the surgery and the clots), but I do ok with my compression stocking and toe cap.

      Luckily, my clots appear to be quite stable where they are and I've had no migration or bits coming off and spreading to "bad" places. 

      Best of luck to you Yvonne.

  • Hello Yvonne. First, let me say how much I admire you. You've fought the good fight and seem to have made it through all this with dignity, grace, and your sense of humor intact. I respect your decision. I think that we know better than anyone how much we have left in us.

    On the blood clot note, I've been having clotting problems for a few years, culminating with nearly losing my right big toe and needing a fempop bypass in that leg. I've been on and off warfarin (now permanently on for a few years) for a while now and in my case it turns out that it is due to chronic (and necessary) use of the kidney hormone Aranesp to keep my hemoglobin up. I've got clots in weird places (including a bigger boob on one side due to a sub-clavian clot - if only I could keep them matching lol). So to my mind, given all the things we transplant patients have been taking over many years, you just never know how your particular body is going to react. My clots aren't that usual, but not entirely unsurprising either. 

    I wish you peace and joy with your family and comfort both physically and spiritually.

  • Good Morning Kim.  So happy to hear from you.  You are so right we are the only ones who can make the correct health decision for ourselves and I am at peace with mine.  I really had only one choice and that is to go on the blood thinner again and wait for another bleed.  After the first brain hemorrhage I had a brain MRI and found that I have seven very weak areas. At this time Eliquist offers the lesser damage and I don't have to monitor my Warfarin levels and be deprived of some of the foods I like and I don't have to test. Like you twenty years ago I was in the hospital on deaths door, so to speak, my heart came  just in time. It has been a very successful heart transplant - nearly perfect match. I've know other transplants that have had clots in their pic lines.  I have never had a pic line. I've been told that this clot in my leg might not dissolve all the way - it is in a vein. But my leg looks good and the swelling is nearly gone. My docs say that I must have a blood disorder but not one that they have ever seen - not one of many tests that have been taken shows any disorder at all. I understand the pain that you suffered with your clot.  I was so in pain I could not even breath.  Do you do your own coumadin level testing?    I've not mentioned that this decision was made with my family, my doctors, and the comfort care team in the hospital - all agreed that when the stroke comes it best to just let go. Thank you for your prayers for me and my family. I offer the same for you and your family.  I so appreciate your sharing with me your story.

  • I am so sorry for your medical troubles right now. I am so glad you had 20 years extra life. I know I am so grateful for my extra life since my heart transplant in 2009. I would not have been able to meet my wonderful grandson, 5 mos old, without it.It is your right to decide how much medical treatment you receive. Don't let anyone try to tell you any different. I respect any health decisions you make, and so should everyone else. Five years ago I was ready to accept whatever was going to happen.It was in God's hands. The doctors said I would not have lived 2 more months without a transplant. Then I got that life-saving phone call.After my transplant I had a blood clot in my right arm from my pic line site all the way up my neck. It was painful. I still have some of it left in my under arm area. The vessel is not occluded though. I take coumadin. Everyone in my family has several genetic blood clotting disorders. I have two and my sister has three.My prayers are with you and your family. God bless you.

  • Hello Yvonne,

    I am so sorry you are going through all this. We are given so many challenges, and it is true when in the hands of God we are more the conquerors. I will pray for you and your family for strength.

    I wanted to tell you about a condition that my husband has. It is called Prothrombin factor 2, basically it is a blood clotting disorder that cause clotting at anytime. I don't know if you have been tested for this. I am not sure if knowing will change any type of treatment but I thought I would mention it. 

    Praying for blessings!

    Lori

    • Hi Lori,

      Thanks so much for replying to my Blog.  First, every test possible has been run on my blood - according to four universities I have only 1% chance to ever have a blood clot - I have had at least 7 or 8 and most likely several others that did not cause me problems.  I was on Warfarin (Coumadin) for about four years before the brain hemorrhage.  I am now on a new drug called Eliquist which is a milder drug but combined with my Prograf drug is very potent.  Doctors say it is not "if I will have another hemorrhage but when". I guess this huge clot in my leg has not been seen before. As the doctors say "you are in uncharted waters."

      But, I really appreciate the information about the Prothrombin factor 2.  I certainly will ask if this test was among all the other tests that were taken. I read up tonight on Factor 2 and it really does not fit my situation.

      I thank you for your prayers - I welcome any and all prayers.  However, I am at peace with my condition and intend to just live every day in peace and thanksgiving  for the twenty years I have been given. God is so good to us isn't he?

      Again I sincerely appreciate your replying and your kind words.

      Yvonne

  • I always face problems looking at diet. After all, besides the drugs we take, we are always eating and sometimes the foods we eat can affect us greatly over the drugs we take or pose a threat by interacting with our drugs.

  • Dear Yvonne

    Welcome back!

    I am so sorry to hear about your clotting experience. You might want to avoid specific vegetables  because severak foods can contribute to blood clotting.

    http://www.livestrong.com/article/510338-what-foods-can-make-your-b...

    http://www.ctds.info/clot.html

    http://www.whfoods.com/genpage.php?tname=nutrient&dbid=112

    Please let me know what you think

    I am sending you a big HUG

    • Thank you Hostess Rise.  Wow, for four years I have  had to monitor those vegetables and other foods that could interfere with my Warafrin levels.  I had a machine at home the last two years and monitored my levels faithfully.  I kept on a strict diet.  Actually I was able to have a green salad but I had to have one every day with the same ingredients and as close as could be to the same size. This clotting situation with me is so very complex - it's hard to grasp.  Interestingly enough my donor died from a Brain Aneurism at age 42.

      Thanks for the sites to look at and study.  I am on Eliquist, a blood thinner, which does not require my staying off vegetables.  But I am still cautious about how I eat - this is a new drug just approved in August 2014.

      Eating is a bit of a pain for me as I am running high in Potassium and am diabetic and have lost my taste buds. These two diets conflict. I have found that if I just stay basically on the same foods for breakfast, lunch and dinner I stay pretty even.  Food is not interesting to me at all any more. But like all of us on this list I just "smile" and do my best.
      Thanks for the big HUG - I need it.

This reply was deleted.

TransplantBuddies & Friends Facebook Group

TransplantBuddies & Friends

My 2nd Heartbeat

Purolator Air Filters

Twitter

Please Donate for CF Patients

Supplements for CF Patients

Planetary Biosciences

Facebook


Instagram

Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need of a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at susygar@aol.com Thank You So Much!