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My heart aches for you. I just went through this the past two weeks. I will tell you that this next ten days will be some of the hardest you’ll ever go through, but you will never regret being at your mom’s side through it all. I pray strength and peace for you during this time. I so understand right where you’re at.
Everyone has a different platelet threshhold for when blood blisters will pop up in their mouths. For mom, she started getting them when her platelets are at 10K. You NEED to get this checked ASAP. Especially if you don’t know what your threshhold is. We got to the point where we knew exactly what mom’s platelet count was just by the size and shape of her mouth sores. Go get a CBC asap.
Mom went home to the Lord today at 7:45am. She went peacefully in her sleep. I was not by her side when she died and for that I am very sad. But I also told the Lord that if I wasn’t, I would take it as from Him that he didn’t want me to be there. And so that’s how I take it. Instead, my lazy butt was home in bed trying to make up for 9 days of little to no sleep. In some ways I wonder if mom was waiting for me to leave before she could/would let go. She knew I had come home for the night last night. Only God knows.
For now, we move on. We’re sad for our loss but have joy in our hearts that she has a new body and no disease.
I am still here – sort of. I am currently “living” at my MIL’s with my husband’s brother as we are both taking care of mom 24/7 while she’s on hospice. Today is day 8. We don’t get much sleep as we go between moving her and giving her meds every 2-3 hours. My husband is taking care of our kids full time while I am here. My BIL took a leave of absence from work to help. This is not a one man job. I am not strong enough to move mom as is needed. My family is having a very difficult time with this separation right now. I go home only long enough to get clean cloths every few days. People have been bringing meals all week that my husband breaks up between the two households and brings to us daily.
Mom is a very modest person and even when totally out of it was horrified at not using the restroom. She would not use diapers. I am amazed at her ability to still hold on to her modesty even while unable to communicate/walk, etc. After 15hrs of not being able to get her to go to the bathroom (we were unable to assist her anymore because she couldn’t help us) we finally had to put her on Ativan for anxiety and catheterize her. She was in so much pain from not going to the bathroom that as soon as they cathed her she was so relieved. Much less anxiety. She is currently on .25ml of Ativan every 3 hours during the day so she won’t “discover” the catheter and pull it out. She’s on .50mls of morphine for pain caused by her fall. She has so much pain from her fall. I think largely because after that she was unable to walk and being in bed has made her stiff so anytime someone tries to move her she winces horribly. The morphine allows us to move her frequently without as much pain for her.
God has done some amazing things as we’ve waited for Him to take her home. First, she had HUGE blood blisters in her mouth from the low platelets. Three days after I discovered them they disappeared. Don’t ask us how. We have all been praying and have had several churches praying that the Lord would not allow her to bleed to death but instead take her some other way. We really felt this was an answer to prayer as it’s been almost 14 days since her last platelet transfusion and she’s doing okay. We can tell her platelets are around 2000 but the mouth sores that have plagued her so badly and were so sore are just not a problem right now. We are so very thankful for this.
Second, my SIL (she is retarded) has done very well through all of this and has forged a relationship with me very well. She is listening to me (which was a real concern)and just in general doing very well. I cannot tell you the relief this is for everyone. But especially me since I will be the one to take care of her from now on. God is so good and faithful.
There is nothing that anyone could have shared with me (although some have as I’ve asked) that could have prepared me for what we are going through right now. And yet, I continue to see the hand of God in the timing of it all.
Mom has been unable to communicate, eat or drink for more then 4 days. Every once in awhile she tries to speak and last night Dave and I both heard her say she is ready to go home. She said it twice. We told her it was okay to go. Today her color rapidly changed from pale/normal for her to yellow and grey so we think the time is short. As a family we are praying the Lord would take her Easter Sunday as we can think of no better time to get a new body then on the day we celebrate our Lord’s resurrection.
For now, that is it. It’s interesting how much of a journey dying is. We continue to ask folks to pray for a comfortable passing for her and so far, that is happening.
I apologize if this is disjointed. I’m running on no more then 4 hours of sleep a night (and many nights much less) and I’m using a laptop which feels weird.
pattiQuote:Originally posted by chuckk333:
My platelets have been steady or going up a bit since I have been doing the pineapple / sesame seeds and leafy greens. As a matter of fact all my counts have either improved some or remain steady. I don’t know if my jmuicing has been the cause but I don’t want to stop just to test out if this is the cause. I am not performing a study.
That’s how we felt. Too afraid to stop for fear of a major platelet reduction. Mom didn’t actually stop the pineapple and sesame seeds until she became platelet dependent. At that point she didn’t have anymore of her own platelets so we stopped. But we NEVER wanted to experiement with the possibilities because it had worked for so long.
I was thinking of you today and the AA and platelet thing. Have you considered juicing green veggies several times a day? This is one of the best ways I know of to increase platelets besides pineapple and black sesame seeds. If there were just one thing I’d do differently for my MIL, it would be juicing greens several times a day.
Something to think about.
I just had a thought I wanted to share since you are just starting this journey. I was making a list of things mom and I have done naturally and was categorizing them into things that I think helped a lot and those that didn’t help as much. If there is one single thing that I would do differently if I could, it’s juicing. My MIL was only doing a beet juice liver cleanse daily and in hindsight I think she would have been better off doing a green juicing at least twice a day. Yes, it’s a lot of work. But after seeing some of the results of others and one guy on this forum where juicing brought his platelets up significantly, that is what I would recommend. Mom used a champion juicer and it was fine. I know if you do a search on this forum of juicers that there was a whole thread on what is the best juicer to buy. But if you did nothing else for your dad at all, I think juicing green veggies with a carrot or apple thrown in for sweetness at least twice a day you would see amazing things happen with his overall health – not just this disease.
My .02 for what it’s worth.
My theory is this: if it won’t harm, and it might help, then it’s worth trying. That’s what we did with the pineapple and black sesame seeds for mom’s platelets and for a year it worked, then it stopped. Which makes me think that it must be the enzymes in these fruits that work with some enzyme in the body to produce the desired effect. When the enzyme in the body is compromised then the juice from that fruit no longer works. If I could only figure out which bodily enzyme it needs to make it work again…….. I need to go back to school and study this stuff but I stink at chemistry.
If you try the pomegranate, let us know what happens.
Cod liver oil is best taken in the morning right before eating breakfast. If it were me, I’d start him taking 2 tbls a day for six weeks (this builds the system up to a normal level) and then drop to 1 tbls daily after that (that maintains a good level of Omega 3’s). The reason for eating it prior to food is that it will tend not to burp up so much if food is on top of it. Also, early in the day pretty much gurantees that if he does burp it up once or twice, it’ll be done before bed so it won’t drive him nuts all night! That’s also why I like the Carlson’s lemon flavor because if I do burp it up once or twice, it’s not fishy – it’s all lemon. I can handle that.
Glad all the info is helping. Always feel free to ask and like I said, read old posts. You’ll find them very helpful.
I am thrilled to hear your dad’s doc is into natural medicine. We were harassed, shunned, talked down to, pestered, etc. by mom’s first three doctors for doing natural medicine. Doc number 4 has been neutral but kind about it. You have a gem! Don’t lose this guy.
All the best,
Neil is right regarding CLO brands not really mattering. What does matter is how much and what kind of chemicals are in the oil from the fish. You basically want to look for CLO that states “tested free from impurities” or “tested mercury free,” etc. Anything along those lines will be fine. Usually taste is a factor for most people that is why I recommended the brands I did.
Also, most folks don’t understand the dosing of CLO/fish oil. A bottle will say for example, “1500mg Omega threes” or whatever. But that isn’t the amount of DHA and EPA in the actual oil. That is the overall amount of total Omega 3’s. These could come from added vit. A or vit. E, or other oils that have omega 3’s. What you need is 2000mg of DHA and 1500mg. of EPA. So if you look on the bottle it will show you how much EPA and DHA is actually in a serving. Then you have to multiply it out to get the amount of oil you need. So for *most* capsules (because some are plus or minus this) you will need 15-30 capsules to equal these amounts depending on the brand. It’s just easier to take 1 tbls of a liquid. The actual part of the fish oil that provides health benefits are the DHA and EPA. I did not want to taste the liquid so I tried to take all the capsules one day. It only took some throwing up for me to decide liquid was the way to go. Duh.
Hope this helps understanding fish oil better.
My MIL has only done alternative therapies and has done quite well. She actually transformed to AML over a year ago and is just now succumbing to it’s affects. Her dx is different then your dad’s.
You can do a search of this forum for “supplements”, “alternative therapies” “chinese medicine,” etc. You can also search for posts from Marla, myself, and/or Seekay or Christine. Most of these posts will have tons of natural info you can read up on.
As for cod liver oil. Absolutely a must. Pills will not cut it. It takes 15 pills to equal one tablespoon of CLO. Our family is liking the Carlson’s Cod Liver Oil Lemon flavor. We just switched to this. It’s great! If one happens to burp it up, all you taste is the lemon! Prior to that we were using Nordic Naturals Arctic Cod Liver Oil orange flavor. It wasn’t bad, we just like the Carlson’s better. So I would recommend you go with a liquid CLO. CLO over straight fish oil is also a better choice.
As for diet changes, would recommend you read the book, The Makers Diet. It will cover nearly all diet stuffs that a diseased person should do. Mainly a whole foods diet, nothing white. Foods as close to their natural form as possible. Good, organic meat is a MUST for anyone with a blood disease. Not everything in that book would apply to your dad because blood diseases are not the same as tumorous cancers, but if you get the basic diet info that will go a long way.
Anyway, hope this helps to get you started.
Epogen is EPO for red cells. There’s aranesp and procrit and I believe in Canada they call it Epogen. They use neupogen or not as commonly, neulasta for white cells stimulation.
It sounds like you are not currently requiring transfusions? If this is correct then there are several things I would recommend. It sounds like you might be in the very very early stages if all they are seeing is larger then normal red blood cells. If you are not requiring transfusions then by all means, a watch and wait is the best scenario. However, and this is a big however, I would immediately begin working on a very healthy diet. I would encourage you to read the book, The Maker’s Diet and check out the Gerson clinic in Texas (I think it’s Texas). You’ll find them online. Juicing daily will go a long way towards nourishing and healing your body as much as you can. I really believe that if you do those three things you will go a long way towards warding off progression of this disease.
Also, it would be worth a second opinion from MD Anderson. They *may* push all kinds of treatment “options” which I wouldn’t encourage. Or they may give you a “watch and wait” protocol. But, it is important that you have the correct diagnosis and I think having them second your current doc (or not) is important.
Taking iron at this stage is unlikely to help unless you’re low in iron. And if you are low, iron pills are not what you need. They are only 10% absorbable by the body. You can get a liquid iron called Floradix that is very absorbable and has some other herbs with it to also help absorption.
Take care, and read, read, read. Everything that you can.
All the best,
I am sorry for your loss. I am heartened to know that your stepmom and you know the Lord. May God comfort and give you the peace that passes all understanding during this time. May travelling mercies be yours.